Advocacy

Click on the links below for the actual text of the various bills.  We are currently reconstructing our Advocacy and Events portions of the site, to be updated in an ongoing fashion through 2017.  See the press release for more information about the National DIPG Awareness Resolution; it needs YOUR SUPPORT to be passed in 2017!

STAR Act: House (H.R.820) Senate (S.292) was introduced February 2017

NBTS article

National DIPG Awareness Resolution H.Res.69 was introduced:  1/30/2017

Press Release 

INFO FOR ACTION DAYS

Congressman Steve Knight (R-CA-25) will be introduced the 2017 National DIPG Awareness Resolution with co-sponsor Jackie Speier (D-CA-14).  Congresswoman Speier is a new co-chair of the Congressional Caucus for Childhood Cancer.

ACTION DAYS (begins 1/30) ON THE WEEK OF THE 17TH March-THROUGHOUT 2017

  • 1/30/2017: Celebration DIPG Awareness Run through Washington DC!!  #runforDIPG #morethan4 #defeatDIPG #CureDIPG
  • For each month following–March, April, and May, we will encourage calls to Congressional Reps to sign the Resolution, and letters to President Trump asking for a Presidential Proclamation for DIPG during the week of the 17th
  • Virtual RELAY for JACK:  Each month will include a J.A.F. DIPG Awareness Run on the 17(January’s run will be 1/30 in Washington DC), and we encourage participants to run on the week of the 17th of the month throughout 2017 (May is brain tumor awareness month) in support of National DIPG Awareness Day.
  • Post selfies and results on Facebook on @runfordipg (National Day page) and or @run4dipg (Run for DIPG) page,  Jack’s Angels Foundation, or Virtual Uberthons (registration site) and wherever else you like!
  • Support DIPG Awareness Day in your state and the Michael Mosier Defeat DIPG Foundation‘s Superhero Sprint May 28 in Bethesda, MD, and the their virtual run as well!  Visit www.DefeatDIPG.org for more information about “DIPG Across the Map”.  All Proclamations, except for California, are for a May 17 Awareness Day.  California’s Resolution is for DIPG Awareness Week, the 4th week of May.

To Support Childhood Cancer Legislation:  Information about the STAR ACT, RACE for Children Act, and National DIPG Awareness Resolution, and how to support them can be found at the following sites, as well as resources for the afflicted:

From 2016

NOTE:  The designations–HR and HRes names will be updated as they are re-introduced in 2017, and on this site as well.  For now:

Why Advocacy Is So Important Right Now

Roughly 4% of our NCI budget(and this is in need of an update by NCI or GOA for cancer research benefits pediatric cancer research, even though cancer is the leading cause of death of any disease in children.  Jack’s Angels work in helping to create HRes69 for DIPG Awareness addresses this issue by asking for more consideration for survival rates and years of life lost with the NCI research grant process.  Please help it to pass; no other surviving legislation for childhood cancer has been able to adequately address the lack of research funding for pediatric cancer, and it must needs be addressed.  Please support STAR, RACE, 21st Century Cures, Creating Hope, and DIPG Awareness.

House:  www.house.gov/representatives/find            Senate:  www.senate.gov/index.htm

HRes.69 , the National DIPG Awareness Resolution does not allocate funds by law but it does do something VERY IMPORTANT that none of the other HR (force-of-law) bills do:   it calls for elevated consideration for low-survival rate cancers and years of life lost (our children) with the National Cancer Institute research grant process. It also honors, by designating May 17  as National DIPG Awareness Day,  the thousands of children who have perished to DIPG, and brings attention and support to those currently fighting for their lives. 

Why is this important?  Legislation for childhood cancer has a habit of disappearing, and usually at the point where the bill addresses the issue of, “where’s the money going?”, and the Government Accountability Office.  While the STAR Act and other bills asking for important funding for helpful programs are vitally important, nowhere does it say, outright, that our children and very low-survival rate cancers ought to be prioritized.  For some reason, this is the big scary thing to say in Washington.  Jack’s Angels says, “Just Say It!”  DIPG!  Does this mean other cancers will have to have more consideration?  Of course it does!  As they should…  Until we are willing to care, to get specific, name the unknown foe and vow to understand it, we will never cure cancer.   Saving children certain to die ought to be a priority and the #1 “incentive” without question.

Original Press Release from Congressman Knight’s Office            Action Days Press Release

***Do you want to HELP more?  Here’s a letter in pdf in support of HRes586 addressed to House Energy and Commerce Committee Members, the group that will ultimately determine the fate of the bill.  Downloadable version:  letter in word

The S.T.A.R. Act–Almost there–thank you for your support–H.R.820

 Encourage your representatives in the House and Senate to endorse the S.T.A.R. Act (Survivorship, Treatment, Accessibility, and Research) for childhood cancer. (actual text) This bill is the compilation of many important provisions included in the last 2 pieces of legislation, namely the Caroline Pryce Walker Conquer Childhood Cancer Act (2008) and the Caroline Pryce Walker Conquer Childhood Cancer Re-Authorization Act (2013) for childhood cancer which did not survive.  What STAR does not include that the others actually had, is a review of funding within the National Cancer Institute with a report to the Government Accountability Office, as well as the allocation of $30M per year for 5 years, a total of $150M for pediatric cancer research.  From the initial bill only $4M was ever allocated. With the growing advocacy movement, more activists, and greater awareness for the unthinkable 4% of the National Cancer Institute budget for research targeting pediatric research, and with the most deadly childhood cancers neglected for decades, people are getting fed-up.  But nothing will change unless we all speak out.  Be part of the democratic process!  Contact your Representatives TODAY.  If you’re reading this, it will only take a moment:

House of Representatives   /   Senate  /   Strongly needing your support HRes69

The RACE for Children Act

The Research to Accelerate Cures and Equity for Children Act

Nancy Goodman on Childhood Cancer Talk Radio: click link here

The Problem:
Children with cancer cannot get access to the most promising and novel cancer drugs available to adults.
• Before new cancer drugs are FDA approved, the drugs are only available through clinical trials to adults and not to children.
• When companies abandon development of drugs for adult cancers, as happens 95% of the time, the opportunity for these drugs to help children disappears.
• After new drugs are FDA approved, pediatric researchers can’t afford to purchase them for clinical studies.
The Solution: The RACE for Children Act
The RACE for Children Act would enable children with cancer to be treated with the most promising new cancer drugs.
Unlike 90% of all new Congressional bills, the RACE for Children is not a new policy. The RACE for Children is merely an update of the Pediatric Research Equity Act (PREA) so that the law catches up with the science.
• PREA requires companies developing drugs for adults to also develop them for children. However, contrary to Congressional intent, PREA has never applied to cancer because children’s cancers occur in different organs than do adult cancers.
• The RACE for Children Act would authorize the FDA to require PREA pediatric studies when a molecular target of an adult cancer drug is relevant to a children’s cancer. The RACE for Children Act would end the orphan exemption for PREA studies. Every newly approved cancer drug has enjoyed this exemption over the past three years.
The RACE for Children Act is a game changer. The RACE for Children Act gives kids with cancers a chance to access the most promising and innovative drugs that are now available to adults.
The RACE for Children Act could give a child one more birthday.
For more information, please contact: Emily Bouck (Sen. Rubio) Emily_Bouck@rubio.senate.gov, Rohini Kosoglu (Sen. Bennet) Rohini_kosoglu@bennet.senate.gov, Austin Carson (Rep. McCaul) Austin.Carson@mail.house.gov, Saul Hernandez (Rep. Hernandez) saul.hernandez@mail.house.gov, Ziky Ababiya (Rep. Van Hollen) Ziky.Ababiya@mail.house.gov.                                                                                                                 1  Update: The KIDS Act has been renamed the RACE for Children Act

For updates on the most important news in legislation, visit www.kidsvcancer.org and www.childrenscause.org.

Action Days in MAY:  NBTS and the Alliance for Childhood Cancer

The National Brain Tumor Society (May 2-4) and Alliance for Childhood Cancer(May 16-17) Action Days in Washington DC:

Visit www.braintumor.org, and www.allianceforchildhoodcancer.org to join in support!


HRes.586
:  A National Resolution for a DIPG Awareness Week debuts in 2016

After working diligently through 2015 to raise awareness for the need for more consideration of DIPG and low survival-rate childhood cancers, we’re very pleased to announce that House Resolution 586, “Chad and Jack’s Excellent Agreement”, in loving memory of Chad Carr of Michigan and Jack Demeter of California, honors tens of thousands of our children who have heroically faced certain death over recent decades and done so mostly without heralding or fanfare of any kind.  The DIPG experience has been for many families isolating, lonely, and emotionally decimating in its uncompromising fatality.  Our primary purpose is to help change this for children who have yet to be diagnosed with DIPG in the future and their families.

Article About HRes586–“Moonshot for Kids”

Actual TEXT of HRes586

This Resolution would not exist had it not been for the “Just Say It!” campaign, and two trips to CureFest in Washington DC.  As an advocate for children with brain tumors, I cannot stress enough the importance of involving oneself in the collective movement and connecting with others working for the same cause.  If you want to advocate for children with cancer, go to CureFest!  Participate in the Summit of the Congressional Caucus for Childhood Cancer, and ask to participate in the White House Briefing.  Be the voice!!

“JUST SAY IT!” Campaign for  a National Day becomes a WEEK

After decades of obscurity, 0% survival rate, feelings of insignificance and agonizing grief at diagnosis for families, and thousands of cumulative deaths,  it is time.  It’s time for DIPG to come out of the dark.  2015 original press release:   PRESS RELEASE  

  Philanthropy 2016-17:  Funding Creativity   #runforDIPG

“May light and hope one day replace despair and grief at diagnosis for DIPG children and their families.” –Jack’s Angels Prayer

 “JUST SAY IT!” –D. I. P. G. Campaign

bib2Most of the high-profile cases of terminal cancer in the news media in 2015, including Lauren Hill and AJ Peterson, had DIPG; did you know it?    DIPG exemplifies the tragedy of childhood cancer in that, DIPG, like most all other childhood cancers, is marginalized as a “rare” or “orphan” disease, although it is responsible for the majority of pediatric brain tumor deaths each year, has no survivors in over 35 years of clinical record, and comes in the regular frequency of 200-300 diagnosed annually.   There has been no progress in the survival of pediatric brain tumors in over 40 years, according to the National Brain Tumor Society, and the field is urgently in need of support.  With regular frequency, for decades, children have been dying of brain tumors with little being done to research the causes and conditions, with windy arguments made for research investors and numbers, completely inadequate in terms of human value.  While we have developed many life-saving therapies for adults, little is done, in comparison, for our world’s most precious commodity:  our children.

Help us encourage the President to make an Awareness Proclamation for DIPG!  We just had National Hot Dog Day for Heaven’s sake…visit the Petition for more information.

 RUNNING CHANT:  Let there be- a NATIONAL DAY- for DIPG–2016!

 DIPG is almost exclusively pediatric, with the poorest survival rate in over 35 years of clinical record.  Brain tumors are the leading cause of cancer-related death in children, yet one of the very least-funded areas of cancer research.  When one poses the question as to why no effective therapies have been developed, the answer seems to be consistently that the “numbers” (200-300 per year) aren’t great enough for research investors.  Meanwhile, only 4% of our tax dollars allocated for cancer research by the National Cancer Institute are designated for all pediatric research.

Help us to make a commitment to our children with our actions and words; tell your representatives in Congress and the President to make our children with terminal cancer a National Priority.

We support the DIPG Research Fund at Children’s Hospital Los Angeles, our local/regional Children’s Research Institution with a strong neuro-oncology program.  This fund is under the direction of Dr. Girish Dhall, Director of the Neural Tumors Program.  It is our goal to raise $1M for this fund, and to encourage the formation of such funds at every Children’s Research Institution in the US.

We support the Children’s Cancer Therapy Development Institute, or cc-TDI, with Relay for Jack May 28


Erin Griffin, the beautiful girl in this video sadly passed away from DIPG September 2014.  Dr. Charlie Teo, internationally renown neurosurgeon, expresses that the lack of funding for research is truly the only barrier to our making progress in treating brain tumors:

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What is it?

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Our beginnings and our MISSION

Our mission is to improve awareness for DIPG, one of the most devastating pediatric malignancies with virtually no survivors, the urgent need for research, and to support the afflicted.  The foundation’s beginnings were inspired by the love and support our local communities of Agua Dulce, Acton, and Santa Clarita, California,  from the diagnosis 10/28/2011, of James-William “Jack” Demeter, with Diffuse Intrinsic Pontine Glioma, or DIPG.  We are committed to affecting change in the experience of a family receiving a DIPG diagnosis for their beloved child, that there be active research and hope for survival.

mommybannerOur happiest accomplishment of 2013 is the “for Jack” DIPG research fund at Children’s Hospital Los Angeles, and thus our campaign to ‘Count to a Million!’ –continues, as does our desire to see such a research fund at every major children’s research institution neuro-oncology clinic in the US.  Please join us in our attempt to be supportive to  those families and dear children who are diagnosed with DIPG, in their walk down this road.    Jack lived 9 months past his diagnosis date, the median survival time for DIPG.  Please consult the “About DIPG” page for more information about this illness.

Donating to Jack’s Angels supports DIPG research at Children’s Hospital Los Angeles, programs like Project Angel Box and our community programs and events for children.  Donations specified for a purpose will be honored.  Currently we have no sponsors and are solely dependent upon community and volunteer support.  It costs money for any business to survive; we appreciate support for our organization’s activities.  It makes fundraising for research and outreach to the afflicted possible.   Thank you for your consideration, and your generosity.

“We were told, ‘…there’s nothing we can do; we don’t know the cause, and we can only provide temporary relief with radiation; no chemotherapies have changed the terminal outcome…’, and yet, no one was taking data from us.  No samples, no testing, no forms, no nothing.  We got an enormous book from CureSearch of forms, that I think was standard for any child diagnosed at the hospital with some form of cancer, but nothing that addressed the urgent need for research, real research…  This is an UNACCEPTABLE REALITY.  All of our research hospitals across the country ought to have data programs for the families to have the opportunity to contribute their life history/lifestyle/genetic information; we could be actively looking for the “non-existent” common denominators of DIPG.   All research centers ought to have the advanced genetic testing/data-collaboration capability.  We have the technology; God knows the doctors would like to be able to do more.  And as more and more families suffer from DIPG, it won’t be long before the status quo’s unacceptability is too strong in our collective consciousness to ignore.  This is now my personal mission.”   –J. Demeter, Jack’s mom

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